Multiple Sclerosis

On February 27, 2011, my wife Pam and I went to Belleayre Mountain in the Catskills to do some skiing. It was one of those crisp, bright winter mornings.

Although it was the perfect day to be out on the slopes, somehow it didn’t feel that way. When we walked into the small building of the adaptive snow sports program, we were welcomed by helper dogs. A couple of guys in technical mountain wear were climbing out of their wheelchairs and were being strapped onto a mono- or bi-ski.

A year or so ago, some of these young men had been riding their motorcycles. They had experienced the ultimate sense of freedom, until an accident left them paralyzed from the waist down. After that, they stopped living life in the fast lane. On this cold morning, it would take them an hour, just to be fitted to the equipment before someone could carry them onto a ski lift.

I looked at my wife. She had a sense of what was coming.

GOING DOWNHILL

As a child she never skied. There was plenty of snow in Upstate New York, but no money to join the ski club. Only in her forties she learned how to ski, and she turned out to be a natural. On our second date she took me to Blue Mountain. “If anything serious were to happen between you and me,” she said with a smile, “you better learn how to navigate the Pennsylvania slopes!” And so I did.

Just as I was beginning to feel more secure on my skis, strange things began to happen to Pam. She’d always been physically fit and well-balanced. Now she became increasingly vertiginous and unstable.

In a matter of months she lost a lot of strength and her energy level went way down. Sometimes we would go to the slopes hoping she’d have a good day, only to return after one short run. Sometimes we would turn around before we even reached the skiing area. Something was seriously wrong, and we eventually found out what it was:

It’s one of those autoimmune diseases where the brain tries to tell the body what to do, but some lines of communication are broken. Messages reach the wrong parts or never even arrive because the body is attacking itself. Some doctors believe MS isn’t one disease, but a collection of symptoms that varies from patient to patient and from day-to-day.

Nobody knows exactly how MS begins, and nobody knows how to end it.

Imagine that, when your doctor tells you: “You have MS.”

FACING THE FACTS

When my wife’s first symptoms began, she was eight years old and few had heard of Multiple Sclerosis, and certainly not pediatric MS. Even today it is notoriously difficult to diagnose. An estimated 2.1 million people are affected by it worldwide. Experts think there are currently 400,000 people in the United States with MS. (This is thought to be a very low estimate, as it is based on those who have been in touch with National MS Society) Approximately 200 new cases are diagnosed every week. That’s one new case for every hour of the day.

Those aren’t just numbers. Behind the statistics are lives that are fundamentally changed, jobs that are lost due to disability, relationships that are tested, families that cannot cope, the end of independence, the beginnings of depression, countless visits to medical offices, endless insurance paperwork, and waking up dead tired before the day has even begun.

Oh, and did I mention the ridicule of neighbors who think you’re drunk because on some days you can’t set one foot in front of the other, or who believe you are faking it to rake in the “big disability bucks”?

When life as you know it falls apart and you’re struggling to wrap your brain around what’s happening… at that time your body decides to treat you to a dose of cognitive dysfunction, one of the many nasty symptoms of MS.

On the sit-ski

My wife wasn’t raised to feel sorry for herself. She’s a fighter. She needed to know what was going on and wanted to be actively involved in her treatment plan. Unfortunately, her body didn’t respond too well to the standard injectable disease-modifying medications. In fact, she felt worse and had to start using a cane. Then came the wheelchair followed by a scooter. Who knows what would be next.

As they tightly strapped her into the bucket seat of the bi-ski, the crew at Belleayre taught me how to best assist her as her able-bodied ski buddy. I would basically hold her on a leash while skiing behind her, as I set the course and speed. I don’t think my wife looked at it that way, though. She probably thought she was holding the reins. Come to think of it: isn’t that the case in most intimate relationships?

BECOMING DEPENDENT

You’ve probably seen the saying: “Behind every great man there is a great woman.” On my wife’s desk there’s a small sign that says:

“Behind every successful woman is…. HERSELF.”

Asking for help is often the hardest for those who are so used to helping others. Having to depend on other people is a humbling experience. Some even feel it is humiliating.

On these white, snow-sculpted slopes, my wife was forced to be dragged down by a Dutchman who wasn’t exactly an expert skier. Only a few years ago, this same guy had had a forceful encounter with a pine tree because he didn’t know how to stop coming down the hill at full speed.

With the help of a Belleayre crew of knowledgeable, caring instructors and after some serious husband-and-wife team building, we had an okay day in the mountains. For my wife, being on a bi-ski didn’t really feel like skiing. It felt more like sledding because she had no control over where she went. She couldn’t help asking:

“Is this the way it’s going to be from now on? Will I ever be able to ski on my own feet again?”

Little did she know that two years later she would return to the same mountain under very different circumstances.

HELP AND HOPE

There is no typical MS patient. That’s typical for the disease. Scientists have identified different types of Multiple Sclerosis, some more “benign” than others. My wife has Relapsing Remitting MS which is most common. It’s characterized by sudden, unpredictable attacks when symptoms worsen, followed by a full or partial recovery that may take days, weeks or months.

September 26, 2010 was an encouraging day for the MS community. The US Food and Drug Administration (FDA) approved fingolimod, the very first oral treatment for relapsing forms of MS. It was developed by Novartis and it’s marketed as Gilenya™.

Let’s be clear about one thing. Gilenya™ does not cure MS. What it can do is reduce the number of relapses, thus slowing down the physical problems caused by this disease. As with all drugs, results are not guaranteed and vary from patient to patient.

PROGRESS

Within weeks after taking one pill a day, my wife started feeling better. She gradually regained strength and started working out again. While I was spending my days sitting in a recording studio, she was running on treadmills, lifting weights and doing yoga. A year later, her scooter, wheelchair and cane were collecting dust. But it gets even better.

On September 29th, 2012, she joined 7500 participants for the Bike MS City to Shore event, riding her own bike and finishing ahead of most of her able-bodied team members. She has yet to have a relapse.

BACK ON TOP

Recently, our family returned to Belleayre on one of those crisp, bright winter mornings. This time we went straight to the main lodge, we put on our gear and hit the slopes. It seemed amazingly normal, but silently, we were celebrating.

My wife’s recovery cannot completely be attributed to some “magic pill”. Pam has to pace herself, avoid stimulus overload and make sure to follow a healthy diet and stay active. A positive mindset is a big plus. She stresses that she’s not some kind of superhero. Some days are definitely better than others. A cure has yet to be found.

I know this blog is read and enjoyed by many of you. That’s one of the reasons I take a day out of my week to write and respond. If you feel you have benefited from my articles, ideas and suggestions in the past year and would like to show your support and appreciation, please consider this.

Make a donation to the National Multiple Sclerosis Society today.

We still have a few mountains to climb, but every donation gets us closer to a cure.

2012 is a year I will remember for many reasons, but the main reason is this:

Your generosity.

Did you know that readers of this blog donated $2,500 to the National MS Society this year? Thanks to your contributions, our Walk MS team raised a total of $6,504!

When I told you that my friend Patrice Devincentis had lost her Sonic Surgery recording studio in Hurricane Sandy, you stepped up to the plate big time.

Donations to Sonic Surgery

Right now, part of my basement is taken over by audio equipment that was donated to Patrice, mostly by friends in the voice-over community.

Just when she thought her career was over, your help gave her hope and a chance to start rebuilding a studio and a career.

As soon as her recording space is ready, I will deliver all the gear on your behalf, but that’s not all.

When you go to the Sonic Surgery GoFundMe page, you’ll see that together we’ve raised over $2,600 for Patrice. We still have a long way to go before we’ll reach our $10,000 goal, but it’s a great start.

SPREADING THE NEWS

As readers, you’ve also been generous with your blog comments (all 2,658 of them), retweets, Facebook “likes” and all the other ways in which you helped my stories reach a wider audience. Thank you so much for that! It works and here’s the proof.

A story like the introduction of Studiobricks (a new type of vocal booth), has reached almost two thousand readers. Mike Bratton’s interview and review of the Studiobricks ONE cabin, has been seen over fifteen hundred times. But there were more reviews this year.

If you’ve been following this blog for a while, you know that I love writing about the business of being in business. Having a great voice doesn’t mean that you’ll automatically have a great voice-over career. You have to be a savvy entrepreneur as well.

When you open up shop, you’re all of a sudden the head of the advertising, marketing, sales and the customer service department. Are you sure you can handle that? Some customers can be a royal pain in the tuches, but you have to attract them first.

Now, all these ideas didn’t appear to me in a dream. It has taken me quite a few years of running a freelance business to come up with certain vital concepts. Trial and error are the slowest teachers, and I had to learn many of my lessons the hard way. I still remember the day I almost made a $10,000 mistake.

Nethervoice studio

STUDIO STORIES

On an average day I spend at least eight hours in my vocal booth/office, and of course I blogged about life behind the mic. I gave you the grand tour of my studio in two installments.

In 2011, 44% of independent workers had trouble getting paid for their work. 3 out of 4 freelancers are paid late or not at all at least once in their careers. That’s why the New York-based Freelancers Union ran a campaign called “Get Paid, not played.”

I tend to write a lot about value and remuneration. Just click on the “Money Matters” category over on the right hand side of this blog and you’ll see what I mean. When my website got a make-over, I decided to publicly post my voice-over rates. Not everyone believed this was a wise move, so I wrote a story exploring the pros and cons of being open about fees.

One relatively new way to fund your business, is to use crowdsourcing. I asked audio book publisher Karen Wolfer to share her experience with Kickstarter. Another money-related topic that came up this year was this: Should you work for free for charity? On paper “giving back” sounds like the right thing to do, but is it always the case? As with any of the stories mentioned above, click on the blue link to read the full article.

TAKING CARE OF YOURSELF

Let’s move from wealth to health. I shall remember 2012 for one other reason. Never before have I written so much about fitness and well-being. In “Be kind. Unwind” I wrote about the importance of taking a break, being in the moment and leading a balanced life.

After meeting the globetrotting host of The Amazing Race Phil Keoghan, I discovered four principles to live in the spirit of NOW (No Opportunity Wasted). In August it was time for me personally to cut the crap and rid myself of excuses that had me trapped in an unhealthy, sedentary lifestyle.

MAKE A DIFFERENCE

All in all, 2012 has been a great year. We’ve had to weather some powerful storms, but the year was also packed with positive change.

It always amazes me how relatively small changes can have a huge impact. Imagine someone throwing a pebble into a pond. See how the ripple effect moves through the water in ever-widening circles. That’s the effect one individual act of generosity can have.

It happens when people who care, share what they have to give without expecting anything in return. It can be time, it can be money or -as in Patrice’s case- even audio equipment.

I am grateful and appreciative that you have chosen to take a few minutes out of your day, to see what I have to say. Many of you came back, week after week. Hopefully, you’ve found my stories and ideas helpful and worth sharing. If that’s been the case, I have news for you:

I’m not done yet!

In fact, I’m ready to push more envelopes, stir more pots and be more outspoken in 2013.

Just like desktop publishing changed the printing business, home studios have forever transformed the world of voice-overs.

If you enjoy hanging out in a stuffy, cramped, dark claustrophobic enclosure all day long, having a home studio is heaven.

Most clients seem to love it. They no longer have to hire an audio engineer and a director and pay for studio time. Theoretically, hiring voice talent with a home studio may save a lot of money, but it can come at a price.

Let me tell you about the downside of home recording.

1. $$$

At some point in your voice-over career you want to get rid of the egg crates and the moving blankets hanging from a pvc frame, and move into a real recording space. You have two choices: Prefab or DIY.

Even the cheapest Whisper Room™ will cost you more than three grand and this does not include shipping (these booths weigh as much as an elephant). The standard, single wall models usually don’t offer enough isolation. Double wall is your best and more expensive bet.

Most booths sound boxy and you will need bass traps to tame the “boominess.” Imagine putting these huge babies in your 3.5′ x 3.5′ space. If you enjoy breathing fresh air, add another $500 for a ventilation system.

Ka-ching!

Of course you can always build your own recording cave. This is not a project you can do on a Sunday afternoon. It might take many months and eat up all your spare time, energy and extra cash.

I designed and built my own booth, but I couldn’t have done it without the help of a contractor-friend. Thanks to him, I was able to keep the costs down. I couldn’t be happier with the result, but if I ever move, my studio stays and I’ll have to start from scratch.

2. More $$$

Read the rest of this story in my new eBook. Click on the cover to access the website and get a sneak peek. Use the buttons to buy the book.

This is Part One of a mini media training for artists, authors, entrepreneurs and anyone getting ready to be questioned.

As long as you’re prepared, you have no reason to be scared!

There’s no publicity like FREE publicity, especially if you run a small business on a small budget.

Right now I’m the media manager and PR-advisor to “Music for MS,” a benefit concert organized by and featuring my wife.

It’s my job to drum up as much media interest for this event as possible, and fill up the venue in a few weeks, by word of mouth and other means.

Every glossy flyer or multicolored poster we would print or ad we’d have to buy, would mean less money for the cause (the National Multiple Sclerosis Society), so I’m not doing that. Instead, I’m mobilizing the local press and I’m using social media to reach out to the community. It saves tons of paper which makes it eco-friendly.

The official campaign began yesterday, and so far we’ve already landed two interviews. This is where things get serious. Anyone can write a glorious press release, but not everyone does well on radio, television or in the papers. I know what I’m talking about because I have trained hundreds of people to get ready to meet the press.

YOU ARE UNINTERESTING

One of the first things my students would always complain about is the focus of the media: Why do they only cover sensational stories? Why has the news become so superficial? Why don’t they come to me for a story? What they’re really saying is this: “Paul, you’re a journalist. I’m interesting and you should interview me!”

My knee-jerk response would be: “No you’re not, and why should I?” But of course I’d keep that to myself. Here’s what I’d say instead:

1. You have to have a hook to be heard.

If your name is Kim Kardashian or Paris Hilton, you don’t have to do anything special to attract the attention of millions. In fact, that would be your only accomplishment: being famous for being famous. Mere mortals such as you and me have to give the news media a good REASON why they’d want to come to us. A hook. Preferably with fresh bait.

News is the report of an event that is:

recent

unusual

previously unknown and

interesting and relevant to a great number of people

Let me add something to that definition: If there’s nobody to cover it, it’s not news. Fortunately or unfortunately, these days, all we need is one idiot with an iPhone.

Secondly, news is news if conglomerates like Rupert Murdoch’s News Corporation or Bertelsmann AG decide we should learn about it.

Third, news is news if the corporate sponsors (or other powers that be) feel it does not undermine their interests. (click here for an example)

Fourth: the more local the outlet, the lower the bar for what is deemed to be newsworthy.

Let’s assume you’re a voice-over professional hoping to attract some interest from the local papers. You’ve just completed another audio book. That’s something recent, but is it news?

Well, it depends on how unusual the book is and how many people would be interested in it. If we are talking about the audio version of Hitler’s secret diaries that were thought to be lost, you might have a story, but I don’t think this type of publicity would do your career any good. Which brings me to my next point.

2. You have to have a clear objective.

What do you ideally want to happen as a result of the media attention you hope to generate? Unless you’re hungry for recognition, an interview is just a means to an end.

In the case of my concert, the overall goal is to raise money and awareness for the fight to find a cure for Multiple Sclerosis, a chronic, mysterious and often misunderstood disease of the central nervous system. In order to accomplish that, I need as many people as possible to come to the concert. This gives me a way to measure the success of my campaign.

Please note: what you hope to accomplish and what the journalist wishes to accomplish, are usually two very different things!

If you don’t know what you want to get out of the interview, don’t do it. Just because you can, doesn’t mean you have to. It’s better to wait for the perfect opportunity than to waste a mediocre one.

If you do have an objective in mind, it’s time to go to the next step:

3. You have to craft a compelling core message.

If you could summarize what you’d like to get across in one or two sentences, what would it be? Let me put it in another way: If at the end of the interview people would only remember one thing, one powerful image or one great idea, what would you want that to be?

That should become the heart of your message, and it is your mission to get it across no matter what.

In the age of information overload, it is harder and harder to cut through the clutter and be heard. People scan the news and rarely look past the headlines or sound bites, so give them headlines and sound bites. You’ll survive.

I don’t care if you think it’s shallow or giving in to sensationalism. Should you get the chance to reach thousands, if not millions of people, don’t waste it by being boring. It’s regrettable to be forgettable.

A sound bite is usually not something you’ll come up with when the intimidating cameras are rolling and you’re staring into the hot, blinding studio lights. Do not count on your magic talent for improvisation. You can’t wing it.

4. You have to be prepared.

Well, well… isn’t that a given? Of course you need to give it some thought. Or is it better to be spontaneous and ‘in the moment’? You don’t want to look too rehearsed, do you?

Here’s my take on that.

One of the biggest mistakes I’ve seen people make is not preparing for an interview. They’ve literally said to me: “But I’m the expert. You can throw any question at me any time. I don’t need interview training.”

Just because you’re an expert doesn’t mean you’ll do well during an interview. Readers, listeners, viewers… they all hate pompous know-it-alls that talk over people’s heads.

I have seen great thinkers, captains of industry and even bishops nearly faint because they couldn’t handle the pressure of the simplest unexpected question.

They approached a 2-minute interview as if they were delivering a half-hour sermon, and when time was up, they had said nothing of significance. Of course they’d blame the network for not giving them enough air time.

Everyone who’s ever been interviewed will agree with me: When you’re in the hot seat, time as we know it does not exist. In the stress and excitement of the moment, people forget the simples of things such as their middle names and the phone number of the organization they’ve come to promote.

Here’s the good news: it doesn’t have to be that way. In the next installment I’ll tell you how to deal with tricky questions.

No matter how tightly you run your ship, not everything will always go according to plan. That’s life.

What matters is how you deal with setbacks, mistakes and mess-ups.

Whether you run a one-person operation or you employ over 33,000 people worldwide, if you don’t go out of your way to treat your customers as if they’re the most important asset to your business, you’re playing Russian roulette with your reputation. This week, US Airways completely dropped the ball.

Symptoms differ from person to person, and can include muscle weakness, spasms, numbness, coordination and balance issues, problems in speech and swallowing, bowel and bladder difficulties, visual problems and fatigue.

We don’t yet know what causes MS, but we do know that MS symptoms can be triggered by physical exertion, overstimulation, temperature changes and stress.

Now think about the joys of modern day air travel. Who doesn’t feel overstimulated, stressed and fatigued after a day of going in and out of airplanes? Even if you don’t have MS, it can wipe you out.

Since my wife was diagnosed, we have learned to pace ourselves. Take our flight to Fort Lauderdale. My wife was invited to speak and perform at an MS gathering (she’s a flutist), and we were scheduled to arrive in the early afternoon. That way she would have plenty of rest to be ready for her appearance the next day.

Unfortunately, our first flight to Philadelphia was delayed by thirty minutes. When we were in the air, the flight attendant assured us that we would make our connecting flight to Florida, as long as we’d alert personnel on the ground who were supposed to be waiting with a wheelchair. They would need to let the gate know that we were on our way, and that the doors of the plane had to be kept open.

That morning we learned three lessons:

1. Don’t expect employees of the same airline using the same computer system to communicate with one another, let alone pay any attention to instructions.

When we arrived there was no wheelchair, a scene that would repeat itself at different times at different gates and different airports. As one of the pursers remarked:

“The guys responsible for getting you off the plane are usually chatting or playing with their cell phones. We almost always have to get them.”

And as we were waiting, time was ticking away.

2. Never trust or act upon the advice of one employee.

We asked four different people involved in ground transportation to notify the gate that we were coming. Some told us they couldn’t do that. Others shouted “Later!” and ran away.

In order to get to the gate, my wife had to jump into an electric car, onto a shuttle bus and into a wheelchair that took her to another electric car. For fit and able-bodied people this is no big deal, but if you have MS it is an ordeal.

3. People are oblivious of their environment.

If you’ve been at an airport lately, you might have noticed a familiar phenomenon. Almost everybody is connected to some kind of portable device, which completely disconnects them from reality. They’re all in their little bubble, totally unaware of, or seemingly uninterested in the rest of the world.

This becomes obvious when you’re in one of those electric cars used to transport passengers from gate to gate. Don’t expect people parading the aisles of the terminals to step aside. They don’t see the car coming. They don’t hear it beep. They don’t hear the driver shout. And when the car finally manages to pass by, people look peeved because they were almost run over.

Meanwhile, the passengers inside are holding on for dear life as they try to balance their bodies while keeping their luggage from falling off. The jerky movements of the car as it is attempting to avoid human roadblocks, are enough to make a healthy person seasick. Believe me, by the time we arrived at our gate, my wife wasn’t doing so well.

That’s why it was a huge relief to see that the plane was still there. As I was taking our luggage off the car, the woman at the US Airways desk looked at me and said in a stern voice:

“Sir, this gate is closed. The plane is leaving.”

I said to her: “Did anybody notify you that we were on our way?” “No,” she answered. “Any chance we could still get on board?” I asked. We really need to catch that flight.” “Sir,” she said in an annoyed tone, “I told you that this gate is closed. We do not keep planes waiting.”

I told her that I’d been on many flights that had left a few minutes late so as to accommodate passengers coming in from other flights.

The woman at the counter looked at me as if I had just murdered her baby. Then she said these seven deadly words:

“THERE’S NOTHING I CAN DO FOR YOU.”

There and then I learned my fourth lesson:

4. Body language is far more powerful than any word in the Oxford Dictionary of Current English.

“What are we to do?” I asked the unhelpful employee. “Go to Customer Service,” she said. “They will get you on the next flight.”

When our car took off again, the driver asked:

“When you landed in Philadelphia, did you let the people on the ground know you had to catch this flight?” I told her we did.

“Well,” she said, “There’s absolutely no reason why you should have missed it.”

As we approached the Customer Service desk, my wife had to get into another wheelchair. I could tell she was exhausted.

“Yes?” said the woman behind the counter, as she was trying to type a message with her long, artificial nails. As I explained what had happened, I learned a few more lessons from the US Airways book of customer treatment:

5. Never give a customer your full attention. You have far better things to do. Keep on staring at your computer screen and continue typing.

6. It’s not important that you understand the customer. The customer needs to understand you.

7. No matter what happens, do not show any signs of empathy.

“So, you arrived late at your gate,” concluded the customer service rep. “Boarding time was over. Let me see when the next flight leaves.”

“But the flight attendant assured us we would make it,” my wife replied.

“She should never have told you that,” the rep said.

8. When things go wrong, blame someone else.

“We asked four people on the ground to make a call to the gate and no one could be bothered,” my wife continued.

“Sir, what are their names?” the rep wanted to know.

I looked at my wife who appeared to be fading fast.

“We were in a hurry to catch this flight,” I explained. “There was no time to write down people’s names. The driver of the electric car told me the gate could have been kept open a little longer.”

“She should never have said that,” retorted the rep. “Your next flight leaves in six hours.”

“But I have a medical condition,” said my wife. “I can’t wait that long. What do you suggest we do?”

“Sir,” said the rep, “I suggest you go to the gate and wait just like all the other passengers.”

THERE’S NOTHING I CAN DO FOR YOU.”

9. Ignore people in wheelchairs. Always talk to the caregiver.

At that point I was really getting ticked off. My wife was treated as if as she didn’t exist and I asked the rep to include her in the conversation.

“I have MS,” my wife continued. “I need to lay down. The right side of my face is already numb. I can’t see properly. I’ve lost my sense of balance and I’m having trouble swallowing.”

“Is there a place we could go to,” I tried. “A quiet place where she can put her feet up and close her eyes. A first-class lounge perhaps?”

“There are Minute Suites at the airport,” the rep said.

“That sounds like a solution,” I said. “Could you get us a room?”

“We could get you there, but we wouldn’t pay for it,” the rep answered. “It’s $30 per hour.”

“Look,” I said as I was getting increasingly frustrated, “it wasn’t our fault we missed this flight. In what way can US Airways accommodate us for what happened? I shouldn’t have to pay $30 per hour out of pocket.”

“Sir,” the rep responded, “you can always file a complaint and send us the bill, but I can practically guarantee you that we won’t pay for it. You missed that flight.

THERE’S NOTHING I CAN DO FOR YOU.”

At that point I asked to speak to her manager.

When he arrived, my wife could hardly hold her head up and parts of her face were twitching. “I can barely swallow,” she said. “If I don’t lie down now, things will only get worse. Your employee said there was nothing she could do for us.”

The manager looked at me and said: “Sir, your wife is obviously upset. Could I talk to you alone for a moment?”

“Absolutely not,” I responded. “We are a team and we’d like to know what you can do to help us. We’re stranded for six hours and my wife needs to rest because she has MS. The longer we wait, the worse it gets. I don’t feel we should have to pay for accommodation. It’s not our fault we missed that plane.”

“Sir,” said the manager, “US Airways has no arrangements with any hotels and we can’t put you up at our lounge. That would be more expensive than these Minute Suites and we’re not paying for that. If I were to offer that to you, I would get fired. Now, do you want to get me fired?”

That did it for me. I snapped.

“All I want is a quiet space for my wife while we wait, and I’d like US Airways to pick up the tab. You turn this around and make it about you losing your job? This is not about you. This is about my wife.”

I stopped for a moment and looked at him. “The stress of having to deal with your customer service -or lack thereof- is triggering all of my wife’s symptoms. Can’t you see that? Are you sure you don’t have anything to offer to us?”

He said: “We did. We booked you on another flight and we told you about the Minute Suites. Other than that, THERE’S NOTHING I CAN DO FOR YOU. You have to be reasonable. I need your name and email address so I can file a report.”

Eventually, we ended up going to a Minute Suite and the organization that had invited my wife to speak, agreed to pay for a couple of hours.

Two hours later, when I stepped out for a moment, I saw the US Airways customer service rep drop off two meal vouchers for us. They were ten dollars each.

Our connecting flight to Fort Lauderdale was delayed as well, and as usual, there was no wheelchair waiting for us at the gate in Florida, even though I had specifically and repeatedly reminded ground personnel to make arrangements. After another half hour wait for the car service, we finally arrived at the hotel around 10:30 PM, 14 hours after we had left our home.

Stepping out of the car, it was as if we had entered a different world. Staff at the Mariott warmly welcomed us with a smile and did everything they could to make our stay as pleasant as possible.

The next day I did some research on airlines and customer service. It turned out that Forbes-contributor Steve Denning had had a similar experience:

“The US Airways gentleman on telephone was the quintessential unhelpful bureaucrat from Hell. He was following rules and doing what he had been told was the right thing to do and saving money for the airline in the short run. The only problem for US Airways that his behavior was rapidly turning me into a vocal detractor of US Airways—someone who would tell the world how badly I was being treated.The agent whom I met at customer service was trying hard, and was being very helpful and pleasant about it, but she was hemmed in by company policies that prevented her from delighting me.

The airline has no provision to deal with the obvious and recurring problem of people who don’t make their connection because of flight delays. Instead the problem is dumped on the passenger to solve, by waiting in a long queue, increasing the level of frustration.”

Denning continues:

“Over the last two decades, there has been an epochal shift in the balance of power from seller to buyer. Today the customer has options and access to good information, can avoid companies whose principal objective is taking money from our wallets and putting in their own. As a result, companies whose primary goal is to make money are vanishing off the face of the planet, ever more rapidly. Studies show that the life expectancy of firms in the Fortune 500 is down from around 75 years to less than 15 years, and fast approaching five years.

(…) The future belongs to firms like Apple, Amazon and Salesforce.com which are dedicated to delighting us. It is some consolation that companies that do not delight us will not be with us much longer.”

As I was reading his words, my mind wandered back to that dreadful day at the airport. Like Denning, we had noticed that some people still seemed to care about the customer. I particularly remember that young guy whose shift had ended but he still insisted on helping my wife get to a room where she could rest. Or the lady back home at Allentown International Airport. She was there with a wheelchair and she stayed with us until we were picked up.

As I said in the beginning: not everything always goes according to plan. That’s life. When something goes wrong:

Acknowledge it

Show some empathy

Listen actively

Understand first. Then be understood

Be accountable

Seek solutions

Don’t make matters worse

Make matters right

It’s a well-known fact that if a person has a great experience, they will tell only a few people. However, if that same person has had a bad experience, they will most likely tell 30 to 40 people.

Whether you run a one-person business or a global corporation, the reputation of your brand rests on the number of positive interactions your customers have with you.

Adopt the attitude that is central to the way the Walt Disney Company consistently delights its customers. When something goes wrong, here’s what they say to their employees:

10. It may not be your fault, but it is your problem. Do whatever you have to do to fix it.

Swaying from one side to the other, Jennifer stopped to take a breath and regain her balance. Her brain was telling her body to walk upright, with that strong, steady gait she had always been so proud of. But somehow, that message didn’t reach her muscles because she kept on waddling like a duck.

As she looked down, she realized how uneven the sidewalk was. Every tile that was sticking out turned it into an obstacle course.

She stopped again and looked at her neighbor’s porch. A shadow quickly moved away from the front window.

When she finally reached the car, she had to hold on to it, to stay on her feet. Jennifer opened the door and swung herself into the driver’s seat. When she drove away, she already felt exhausted, and the day had barely begun. She wondered how well she would do at the audition.

NEIGHBORS

The people next door were old school. They didn’t say much, and when they did, it was usually behind her back. Much of the world was a mystery to them, and yet, they acted as if they knew everything.

For one, they thought that Jennifer was lazy, because she hardly ever left for work in the morning. They had no idea that Jennifer had a state of the art voice-over home studio equipped with ISDN and SourceConnect.

Secondly, they were pretty sure that Jennifer was faking a handicap. One day, they had seen her walking with a cane. The next day, she seemed to be totally fine. Besides, she looked great. Sick people usually don’t look that good.

Perhaps Jennifer was feigning disability to get money from the government. How else could she afford the mortgage? After all, she had no job and people abuse the system all the time.

The neighbors also knew something else: Jennifer liked a drink or two. That would explain the swaying and the stumbling on the sidewalk. In short: Jennifer was a jobless, lazy drunk who shouldn’t even be driving. She should be ashamed of herself!

THE STAGGERING TRUTH

This week is MS Awareness week, and like many other people who suffer from multiple sclerosis, Jennifer was gearing up for the annual Walk MS event in May. She needed sponsors for the walk and she decided to stay close to home. Jennifer loved to bake and had an idea: she would go door-to-door with her delicious home-made cookies and raise funds for the event.

As the oven was heating up, she thought back to the last meeting of her support group. That night, they had discussed the many misconceptions surrounding MS.

Larry, the facilitator, warned everybody:

“When it comes to a chronic illness like MS, if it’s not visible, it does not exist. In other words: as long as you’re not in a wheelchair, people tend to think that you must be doing alright.

Some folks think that MS is the result of a poor diet or negative thinking. In other words: you’re basically doing it to yourself. Eating healthy and an optimistic attitude alone could solve the problem. Wouldn’t that be lovely?

As you know, many MS symptoms are silent. Different people have different symptoms and some of them come and go. There’s poor coordination, fatigue, vertigo, visual disturbances, tremors, spasticity, weakness, slurred speech, unstable walking, sensitivity to heat… do I need to go on?”

POLLING THE PEOPLE

“When they surveyed people in the UK about MS last year, almost half of the respondents couldn’t name a single symptom. Others believed that MS was contagious or inherited and almost always fatal. None of that is true. Mind you, the people that were interviewed were from a cross-section of the population. They weren’t exactly uneducated.

So, on top of suffering from a nearly invisible autoimmune disease, people with MS also suffer from these myths and misconceptions.”

At that point, Carlos interjected. He had been a flight attendant for many years, until MS had him grounded.

“I always tell people: Even though I have this disease, it’s not who I am. I’m still the same person. I don’t want your sympathy. I want your understanding.”

FEELING IT

Have you ever wondered what it feels like to have MS? Singer-songwriter Kristie Salerno Kent was officially diagnosed in November 1999. She made a short film about living with MS. Please take a few moments to watch it. I think you’ll like her approach. Depending on your computer, you might have to turn the volume up a little:

DOOR-TO-DOOR

Let’s pick up Jennifer’s story where we left off. Her scrumptious chocolate chip cookies were ready and wrapped with an orange ribbon. Within the hour, she had sold almost her entire batch to the people on her block, and there was only one house left: the neighbors. On her last legs, she rang the doorbell.

“What’s up with you?” asked the neighbor. “It looks like you were hit by a truck.”

“Oh well,” said Jennifer. “It’s the fatigue. I’ve been going door-to-door to sell these cookies for the MS Walk…”

“I know exactly what you mean,” interrupted the neighbor. I get tired too. We all do. Just get some rest and you’ll be okay. Why are you selling cookies? Did you join the Girl Scouts?”

“It’s for people who want to sponsor my team for the MS Walk in May. You get three for a dollar,” said Jennifer.

“MS… that’s what Michael J. Fox has, right?” asked the neighbor. “He looks fine to me. Saw him on the Olympics a few weeks ago. Once an actor, always an actor.”

“I believe he has Parkinson’s,” said Jennifer. “I raise money for Multiple Sclerosis.”

“I’ll tell you what,” said the neighbor. “I just gave money to those poor people in Haiti, and I’m sure you’ll make someone else happy with these cookies for Multiple… whatever it is. Right now, my pizzas have arrived.”

As Jennifer walked back to her house, the guy from Domino’s made his delivery.

Approximately 400,000 Americans have MS, and every hour someone is newly diagnosed. Worldwide, MS affects about 2.1 million people. Even though there is no cure, there are now FDA-approved medications that have been shown to “modify” or slow down the underlying course of MS. In addition, many therapeutic and technological advances are helping people manage symptoms.

MS SOCIETY The National MS Society is the largest nonprofit organization in the United States supporting research for the treatment, prevention and cure of multiple sclerosis. Approximately 83% of Society income is devoted to research and service programs that enhance the lives of people with MS and their families.

WALK MS Every spring nearly 300,000 people unite across the country to participate in Walk MS. All walks have an accessible route so people of all abilities can participate. Funds raised support the Society’s research and services programs.

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